Disabled first-hand..

I look like I am retarded...how do I know? Because I was once able-bodied and thought this this of others when I didn't know better. Not only am I paralyzed in a wheelchair but I also can't hear, see, or talk well. In my opinion I look pitiful. What some don't realize is my mind is virtually unscathed...I think the same. This is a blessing! I find I have to put doubts, reticence, anxiety, and arrogance aside anytime I go anywhere. Generally I'm going somewhere for my children or Forrest. Sometimes I just like to get out for myself. I am committed to not letting this situation define or dictate my life...this is not easy. The pastor said last Sunday that "it's not over until God says its over". That is right. The danger has been thinking that my life is worthless because it is different, basically foreign to me. However, my life is meaningful and is meant to be productive and will be. I am the only mommy Amelia has and that is one reason I plug on, not to mention that I have come to the conclusion that my loved ones are happy that I am still with them and didn't die. Impost importantly I have concluded that the Lord still has designs for me, the least not being to praise Him! I am disabled yet I am more abled in my mind than I ever was! I praise god!

I was so thirsty...

I didn't drink water from midnight the day of surgery(April)until the middle of July. There are reasons for this: at first I was in a coma, I had a tracheostomy and feeding tube, and even when I started relearning how to eat ,regular liquids were the last to be learned. I had dreams about ice water even when I was unaware of what was going on. This evidences my mind's thirst and how badly I wanted a drink. As I got stronger in rehab I would try to cheat my way to a cup of watering I especially would try to get water from the occupational therapist interns one of my favorite tactics waste ask for a small cup after brushing my teeth. I mean who would refuse water for that? Some gave me water some didn't...I I was very good about getting what I wanted much to my chagrin. In the shower(remember I was never alone), I would try to sneak a few mouthfuls. The difficulty lay in my ability to physically swallow(to this day I have to use a straw to drink). At first I didn't really believe that I had any problems drinking, then to my horror I discovered that indeed I did. That discovery diminished my desire to "cheat". I have been thinking of God's living water. He promises that we will never thirst again. I don't know about you but that means something to me! I tended to forget or ignor God's provision for me when it was abundant, plentiful, and easily obtained. I never want to ignore any provision God has for me again. As an aside, I also have the assurance that Gods provision is perfect and for it I am ready.

I thought it was hilarious...

The first time I really laughed after surgery was not with company but by myself. I was in the rehab hospital and as expected the food wasn't 5-star. In fact, I lived for breakfast because I believe breakfast can't be messed up! Anyway, the kitchen head at that time kept talking up dinner which was to be someone's homemade spaghetti. Welli was certainly looking forward to it but not holding my breath that it would be that great. Surprise! It was pretty good! Now did I mention that my face is also paralyzed and I have difficulty eating? Did I mention I had to learn to eat again because of having the tracheostomy? Well, let's just say those conditions contributed to my laughable moment. Since it was so good I wanted to scarf it down. (I no longer scarf anything down). At one point I finally realized I had spaghetti hanging down from my lips and sauce all over my face. (remember I can't feel anything.) At that moment I realized how I must look and boy did I laugh! People at other tables must have looked at me and were horrified...I mean they must have thought they let anyone in the dining room! I truly thought the whole incident comical and hilarious! I hope God laughed since He apparently knew I must laugh!

I want to move on...

I am tired of this ordeal. I have a feeling I am going to deal with large physical deficits the rest of my life. I am evidence that life can change dramatically in a second with no preparation. I do so want to be positive because I know that negativity isn't from God and my situation is not helped by it. I am really having a difficult time adjusting so I am just going to list facts or things I believe without trying to make sense of them.
1.). I amm alive...I giveGod credit.
2.). This is getting old...
3.). I don't want to be unaware o unsympathetic about the needs of others...I a lucky and blessed comparatively.
4.). I am changed yet I am the same JamiSue.
5.). I do miss what I used to do...
6.) I want to skip ahead to me functioning in life well...what does that look like?
7.). I want to scream "when will this be over?"
8.). I want to radiate Jesus through this all and be used by Him...I desire that this wish is authentic without pretense.
I have alo of thought but as my daddy would say...now is the time to "keep keepin on".
Lord Jesus help me not to forget my many blessings.

When I found out...

I first experienced diplopia (double vision) the Saturday (march 5) before Amelia was born. I was driving to Olathe college church of the Nazarene to quizmaster a quiz...I knew that something was up with my vision I just hadn't identified it yet. I had great difficulty driving the next Monday to Topeka and back to Basehor but there were other things on my mind like giving birth to a beautiful baby. The double vision continued but I compensated for it like I had every other symptom. Finally my maternity was soon going to be over and driving was both difficult and scary so I decided to visit my optometrist. Now I scoured everything on the web and knew that my diplopia was probably idiopathic and wasn't too alarmed. If it wasn't idiopathic I was unable to find good explanations but really bad ones. I quickly dismissed the idea that my vision was anything other than annoying. After seeing the optometrist I still had no answers and I made an appointment with an ophthalmologist who referred me to yet another ophthalmologist. I knew this was "mountain out of molehill" stuff...I just wanted to be able to drive safely to work in Topeka. (this latest ophthalmologist was 1 of 2 neuro- ophthalmologists in Kansas City...I currently see the other) Anyway this doctor examined me but also ordered an MRI to be on the safe side. At the imaging lab they performed the MRI ( I was worried about the expense) and had me wait afterward. I didn't know anything was up but my husband Forrest surmised this wasn't normal protocol. The technician and receptionist finally came to us and said "we don't want to alarm you but go to the closest ER". I couldn't believe there was anything wrong with me but to Overland Park ER we went. Forrest dropped me off and then went to check on katy, my 11 year old who was at home alone. The imaging place had called ahead and I noticed that everyone seemed grave and sympathetic but I just thought they will fix this. OP called their head of neurology in who finally told me I had a tumor but it was beyond the skill of his colleagues and him. He said it had to be removed and I had the luxury of time to decide where but I shouldn't wait longer than a week. He started rattling off hospitals like mayo clinic, m.d. Anderson, etc. He said that frankly KU Med was good and I agreed that I would go there. I heard him set up and make my transfer to KU outside me ER cubicle. He insisted that I see only a certain doctor and I insisted not to be transported by an emergency vehicle. I later learned the physician on which he insisted was the head of neurology and very good. I was direct admit to KU and saw the doctor the following morning who sent me home only to come back for surgery 3 weeks later. At this time Amelia was3 1/2 weeks old. I thought this was serious but they would fix it and I would be good as new...

Fantasy football and me...

I was finally home the middle of July. Guess what. Going home doesn't mean you're ready to party. I was weak and the going home was less than desirable. First of all, I couldn't escape the knowledge that I had a newborn and couldn't take care of her the way I wanted, the trek to get to the shower seat and eventually tub , was what I called the "tunnel of doom". Mostly, I was tired and didn't care about much. I mean I couldn't cook the way I had or play the piano so in my mind coming home wasn't that great. One Sunday at church I saw the table for fantasy football...it was a sign-up. Forrest signed me up as i couldn't cocentrate very well. Finally I was excited about something for I loved college fb! Over the years I had been in many fb pools and contests. Most were college fb but alas this one was not. Undaunted I was anxious for it to begin. There was some computer navigation in order to begin the league and I found I could not do the simplest tasks. I believe I missed the draft and the first two games...fortunately forrest got me set up. I have gained strength and probably by game 5 I was checking to see the results. I would be frustrated because I knew what I wanted to do with my team I just wouldn't have the physical or mental energy to make it happen. For instance adding/dropping players, using injured reserve, etc. didn't become manageable until the season went along. I have often thought that I need to give credit to fantasy fb for much of the return of my brain power in computer or iPad navigation. Aurally, I can do it seems like everything but but lists or typing I had to relearn, gain strength, to accomplish. Today is kinda a down day but I know and have said there are blessings everywhere...so I give thanks for the blessing of fantasy fb! I'm just glad the season was long!

Ps...I did terrible but there is always next year!

The dream that wasn't...

When I first "woke up" I was completely convinced I was in dream. I mean who had heard of a lift that conveyed you overhead like cargo, and giving meds in a stomach tube? Surely that was science fiction material. I decided to do a little research. Come to find out, the nurses, my mother-in- law and sister-in-law, Forrest, and others said very seriously "no, this was not a dream.". Finally, I decided that even if nearly losing my life was a dream, doing my therapy was the only way I knew to get back to Forrest and the kids and therapy I would do. I know some people think that my choice to give God credit for saving my life is easy. After all, what else can a hemiplegic do? One reason that I would like to recover is to testify that I am a changed person. God saw fit to save me and why wouldn't I give him the credit? I want my lifeto always reflect the glory of God!

The first shower...

I will never forget...
As I could not speak I find I don't recall how I exactly communicated the day I "woke up",however I showered. First of all, I was totally unprepared for my immodesty. I suppose I was laid bare the weeks I was in icu, but I don't remember that time. i was conveyed by a hoyer lift to a"shower chair". This was a PVC reclining contraption with a hole cut out the middle, where I sat. I was utterly embarrassed but too weak and of course unable to walk,thus I could not do anything myself. I will always be grateful to my cna that night(I think it was night). My cna was named Sheila and she patiently unmatted and washed my hair that had almost a month of neglect. I think it took alot of people to get me showered that evening and I can only imagine how I smelled...I have since progressed to jacuzzi baths(I have my husband who transfers me to thank), but I haven't forgotten one of my very first acts upon waking.
Sheila and others taught me much about selflessness. Jesus is totally selfless in a way to which I can only aspire. I try but selflessness is quite contrary to human nature.

PS--remember I am blogging what I don't want to forget...